One in 1 Hundred. Living, loving and learning more every day from our child with a congenital heart defect (CHD). We share our stories here in hopes that they will help you along your own journey. CHD Blog, TGA, ASD, VSD, Pulmonary stenosis,COARC,artery stretching surgery.
Kristen Tragethon.

WHAT'S IN A NAME

The One in 1 Hundred comes from the statistic – the number of babies born with a congenital heart defect every year. When you are pregnant you hear a lot of statistics and they don’t really hold any true meaning to you personally until you become that 1 out of 100 and your life is forever changed. Once you are that 1, I don’t think you ever look at statistics quite the same again. Kalvin has not only touched my heart, he has kissed my soul. He has changed me for the better in ways I didn't know existed and for that I am truly blessed. I tried to explain this to a pregnant heart mom and I don't think she quite understood until her heart baby touched her very own soul. Here in this blog, I will try and share with you all our experiences and it is my hope that they will help and or provide you with some comfort. Thank you for listening.

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I received an interesting phone call from Kalvin at work on Friday. The kind of phone call you might expect to receive from your twenty something year old son, but certainly not from your seven year old. Kalvin had asked his friend, let's call her Catherine, to marry him at recess. "Mom, I did it! I wasn't sure how it was going to turn out, but it turned out as well as it could. She said yes!" he exclaimed.

I was a little shocked. Not only because Kalvin is seven, but because we had not heard a word of this plan of his. Kalvin is not very good at keeping a secret or keeping his worries to himself. So how he plotted this all by himself and kept it a secret is quite a feat.

Kalvin has always had lots of friends...who are girls. All of his play dates, in fact, have been with girls. Kalvin use to be into very "girly" things - Barbies for Christmas, pocket books, pink Hello Kitty wallets -you get the picture- so we never gave it much thought that most of his friends were girls. We assumed Catherine was no different than any of his other friends.

Until last fall. I was making dinner and Kalvin was sitting on the couch, arms folded over the back sort of gazing off into space. He had a few really heavy sighs that prompted me ask him if everything was okay. "Yes, it's just that I can't stop thinking about Catherine," he said.

"Ohhh?" I inquired. "What about her?"

"I really like her and I just can't stop thinking about her," he responded.

"What about her do you like? Her pretty hair bows? Her barrettes? Sparkly sneakers? Does she make you laugh?" I peppered as I glanced his way and caught a glimpse of the goofiest grin on his face.

"Mom, I just love everything about her," he said - goofy smile still completely covering his entire face. Still gazing off into space.

"Nooo," I thought, "This can't be puppy love, he is only six years old!" I was shocked. I was not expecting this. Not at all.

For the next year we would hear all about Catherine. They were in the same kindergarten class and some nights-ok most nights- his mood would depend on how nice Catherine had been to him that day. We got to know everything about Catherine. Her sisters. Their dog. Her parents. Their vacations. I felt like I personally knew Catherine and her family. Kalvin was devastated when he found out they were not going to be in the same first grade class the following year.

By the time fall rolled around, we really didn't hear too much about Catherine anymore. Kalvin would still talk about her from time to time, but not like last year. We thought he had out grown his little puppy crush.

Then recently, Catherine's name came up. She had been out of school for an entire week with the flu. Kalvin was really worried about her all week and began to fear she was seriously ill. We emailed her mother who assured us she was on the mend - Kalvin was so relieved as were his father and I. Kalvin began replaying their reunion at school to his father while we were at an appointment in Boston waiting for Dr. Kim to come into the room. "Oh Dad, did you hear? Catherine came back to school yesterday! When we saw each other on the playground we hugged. It was a really BIG hug, dad. One of those hugs that lasts for a looonnnggg time," he stated. Then he went on ever so seriously, "Oh, I probably should being sharing our private business with everyone." He chuckled. And that was that. Everyone was his father and I.

His father and I looked at each other, "He has private business now? He is still seven? Right??"

I was quite curious about the details of the proposal. So naturally when I came home from work on Friday, I promptly asked him again exactly what had happened at recess. "Well, it really was the best possible outcome, mom," he stated. Where does he get these phrases from? Honestly, he is a bit of a romantic, an old soul we have always said, but this is just a bit over the top.

He began replaying the event for me in detail, "I asked the two girls who were playing with Catherine if they could give us a minute alone and the girls agreed. They left us alone and Catherine said "Ohhh, a private conversation...heehee."

Then I got down on my knee like this (see photo above) and I held out my arm like this (he stretched his arm straight out) and I said "Marry me, please?" Then, she looked right into my eyes for what felt like forever and slowly shook her head up and down and then said "yes."

"She said yes!" he exclaimed. "I was so happy, I wasn't quite sure what she would say, but she said yes!"

He seemed so relieved. Like the weight had lifted.

I then proceeded to ask the only normal questions for a mother of a seven year old who has just proposed to a girl, "Where did you get this idea to get down on one knee and ask her to marry you?"

"Oh, I saw it in a Kay Jeweler commercial," he said. "I have been planning this for a long time, but I didn't know if I could get up the courage to ask her, but I decided to just go for it."

We have always tried to limit and monitor the television that Kalvin watches, but this year he began watching a lot of sports. Football and hockey have the most inappropriate commercials for kids. We weren't really worried about the Kay Jewelers commercials however, it was more the Bud Light commercials that we were more concerned with. Silly us.

"When are you planning to get married?" I asked hesitantly.

"Oh, not until we can drive," he replied.

"Do you have any other plans I should be aware of?" I bravely asked, not sure I was ready for the response.

"Well, just that we are going to have seven children. She says I have to work and I told her she will have to drive the kids everywhere and pick them up from school," he answered. "I am not sure when her bridal shower will be."

Somehow, I see a few "broken hearts" in this boy's future. It is one thing to help your child recuperate from heart surgery, but quite another to help them mend a "broken heart." I don't think I am ever going to be ready to handle this boy's "broken hearts".

I mentioned earlier in this post We Dont Always Get Chances Like This ﻿how I found this wonderful book For You, Just Because You're Very Special to Me -thoughts to share with a wonderful person by Douglas Pagels. I started out reading it to Kal every night before his nightly book, but slowly it became less and less often. Tonight, I was fortunate enough to spend some extra time with Kal before bed. I read him a few chapters from Junie B. and then picked up the special book and read him an excerpt. Just me to him. I looked up when I was done reading and he said to me, "That was nice."

He had an odd expression on his face that made me take a closer look. I seriously thought he had something in his eye and asked him. "No," he managed to reply.

Then, the tears rolled down his cheek. My seven year old was so moved by these simple words that he was brought to tears? Words I think he knows in his heart without being reminded. But maybe not. I too, was now all choked up. "That was nice," I said, "and so very true. I think of you all the time when I am at work and I wonder what you are doing. Are you in gym class or out at recess? "

"Mom, recess is at 12:30 and gym class is at the end of the day," he reminded me so matter of fact. Like a seven year old, I guess.

"I know, but sometimes I forget and I just wonder what you are doing, who you are talking to and if you are smiling," I explained.

"Really? You really think of me during the day?" he asked.

"You are always here in my heart," I said as I pointed to my heart.

I must remember to say these simple words more often. As CHD Awareness Week winds down, I must remember to make every week a week for touching the hearts of those I love. For finding a way to remind them that are so important to me.

Kalvin saw a few of the CHD Awareness pictures and wanted to make his own. He was so excited and proud that he thought of this all on his own - especially the pointing to his heart. What a brave boy you are, my love.

Press play and enjoy-everytime I hear this song, I think of you, Kalvin.

Of every dollar the government spends on medical funding only a fraction of a penny is directed towards Congenital Heart Defect research.

There are more than 40 different types of congenital heart defects. There is no known prevention or cure for any of them.

There is no known cause for most heart defects in children; anyone could have a child with a defect. There is an assumption that the cause of the defects is genetic, but only a few genes have been linked to heart defects.

I share my stories here from my heart to let other mother's know that they are not alone and that there is hope for people with CHD. Creating awareness about CHD helps countless people. Before having a child with CHD, most people have never heard of congenital heart defects, yet they are the most common birth defect in the United States. People believe that diseases like autism, Down's Syndrome, spina bifida, cystic fibrosis and childhood cancers are far more prevalent, when none are more common than CHD.

I started thinking about all the people who are affected by Kalvin's CHD in one way or another after Kalvin's most recent cath procedure. His grandparents who love and cherish him, but who often stay behind to support us at home. Kalvin's teachers - when he misses school and when he becomes more anxious than normal surrounding his procedures. His friends - who wonder where he is when he is absent from school and from events and miss him, but don't really understand where he is. His friend's parents -who are left to explain what a CHD is when they don't really know themselves! Our co-workers - who support us and cover for us when we are out of work. Our friends and extended families - who worry along with us and offer support and an ear when we need it most. People - who take the time to talk to Kal and send him gifts and cards. Thank you all so very much. Our words cannot express our appreciation for your love and kindness. Thank you. So many people affected by Congenital Heart Defects in one way or another, yet so many people still don't even know what a CHD is.

The result is a severe lack of research funding and a lack of education about CHD. We [CHD families] are trying to change that. Trying to change legislature to make screening mandatory in hospitals. Holding charity events to raise money for research and awareness. Starting and participating in support groups.

February 7th - February 14th is CHD Awareness Week. Help us spread awareness because chances are if you are reading this, you too have been touched by CHD.

Hope sees the invisible, feels the intangible and achieves the impossible.

So there we were, settled into our second movie of the afternoon in the cath-lab recovery room. Kalvin had finally let up a bit with his pleading to sit up and to get out of bed. We were in the home stretch…the fifth hour of Kal lying flat on his back. Just one more hour to go. I had just come back from getting something to eat and all seemed to be going well. I put my coat on - the room was freezing cold because Kalvin kept saying that he was hot, really hot, hence the cold towel on his head in the picture. Lars finally decided to take a break himself and went to get a cup of coffee. I settled in next to Kalvin on the chair- nice and cozy and warm with my coat on. I layed my head down next to Kalvin's on the bed. Ahhh, all was calm. I think I may have even had one eye closed for half a second when Kalvin yelled out, “Mom, mom. I have to get up RIGHT now!”

I jumped up, “ No, no Kalvin just one more hour. We are in the fifth hour and we only have to lie down for one more hour. We are almost there."

"No mom, I HAVE to get up. RIGHT NOW, mom." he blurted out.

"What is it Kalvin? What is the matter?” I pleaded.

"My stomach hurts. I have to get up!” he shouted.

I thought maybe he had to go to the bathroom. So I asked, but that didn't seem to be the case. And then it began. The vomiting. I grabbed the barf bag left by his head and rang the nurse's call button. I was all alone. Kalvin completely missed the bag. Throw up was now all over my coat and my hair. Nice. It seemed like too much time had passed and I feared the nurse would think we just wanted to fix the DVD player again. “HELP!” I screamed.

It worked. They came running. A nurse was instantly at his bedside. “You help him with the vomiting,” she stated. “ I have to look at his leg.” She mumbled something about the stomach muscles used in throwing up causing the wound to open up while simultaneously lifting the bed sheets. Blood was everywhere. Everywhere. The blood looked like it was pouring out of the wound. I looked away. I tried reassuring Kal that all was going to be ok. Surprisingly, he didn't seem that concerned about the blood. I am not even sure how much of it he could see from the angle he was at.

The nurse called for assistance. In an instant, the room was filled with doctors and nurses. Kalvin was screaming. The doctor was applying pressure to the wound to try and get it to stop bleeding and it hurt. Kalvin let us know just how much it hurt. He began begging me to make the doctor move her hand away from his leg. He tried pulling his leg away. He attempted to swat the doctor's hand off his leg. His hand was then completely covered in blood. He then wiped the blood all over his face. I was trying to hold him steady, but it was hard. There was blood everywhere. He was thrashing all over. He was in serious pain. This boy never complains about pain. It must really hurt. The anesthesiologist was called in.

I spotted my cell phone across the room. Lars, I need to call Lars. I thought of Lars' last words as he stepped out for the coffee, “Call me if something comes up.”

Somewhere in the fog I flashed back to the last time I could remember Lars asking if he could go get a cup of coffee. I was laying on the ultra sound table 20 weeks pregnant with Kalvin. The ultra sound technician told us she was trying to get a good picture of the baby's heart. I think I then asked her some question about another body part and she barked back at me, “The heart is a pretty important organ.”

To which the sarcastic side of me responded, “You think?”

“Well yes,” she said. “You need one to live.”

Hmm, yes, I realize that I thought to myself.

I was clueless, of course, that anything would be wrong with my baby’s heart. I had never heard of a congenital heart defect which, I guess is why, I wasn’t really nervous. She left and said she might need to take more pictures, she was going to check with the doctor. That is when Lars said he was going to go and get a coffee. I didn’t think anything was wrong, but something in me told me not to let him leave...just in case there was a problem. Those were our last few moments of being in the dark about congenital heart defects.

I knew when Lars came back and saw the room swarming with doctors and nurses he was going to panic, but I couldn’t leave Kalvin’s side for a second to grab my phone. The anesthesiologist came up behind Kalvin’s head and said she thought we needed to get him something right away. He was still crying out in pain; tossing and turning trying to get his leg away from the doctor applying the pressure. There was talk about what sedative to give him, but it was all going over my head even when she said she was going to give him “propofol.”

I couldn’t figure out why they were looking at me like something was really wrong so I innocently asked if that was going to require a needle. "Oh no," they said. " We will administer it through one of his IV’s."

“Ok,” I said. “ We better do it.”

Lars walked in, calmer than I expected. The anesthesiologist was administering the propofol. It stung his hand as it entered through the IV. He screamed out and pleaded for the doctor to stop putting the medicine in. It was awful. It seemed to take forever to take effect. As he was drifting in and out occasionally still trying to sit up, I realized where I had heard of the drug propofol…Michael Jackson-of course. And I, not thinking, blurted it out to the anesthesiologist, “Is this the drug Michael Jackson took?”

“Yes,” she responded. “That is why I am here with Kalvin and will be the entire time he is on it - unlike Michael Jackson’s doctor.”

Ok, I get it now. The looks at the mention of the drug in the beginning. For a minute I panicked Kalvin had heard what I blurted out about the Michael Jackson drug. He is a huge Michael Jackson fan. (Take a look at the pictures of his Halloween costume from 2010). He didn’t know Michael Jackson had passed away for quite awhile - I tried to shelter him from that news for as long as possible. One day his babysitter let it slip that Michael Jackson had passed away. Shortly after that, he learned from the media that Michael Jackson had passed away as a result of taking too much medicine. Of course, this brought on months of questions about what exactly happened to Michael Jackson.

I quickly realized what I had blurted out and glanced down at Kal to see if he had heard me. I hoped he had not heard that he was now receiving the drug that killed Michael Jackson (Kal does not miss a beat-pun intended). Luckily, the propofol had kicked in and he was not hearing or feeling much- just very relaxed…finally.
﻿﻿﻿﻿﻿﻿﻿﻿

Kalvin liked to wear his Michael Jackson costume to the grocery store on occasion.
When the customers waved to him, he was convinced they thought he was the real
Michael Jackson and that they were going to think Michael was mad at them
because he didn't stop and talk to them. It was adorable.

﻿﻿﻿﻿﻿﻿﻿﻿ Then the nurse broke it to us…Kalvin now faced another six hours of lying flat on his back. Ughh. I just prayed the propofol would keep him still and happy for a while. It did. Once he woke up, he was in much better spirits. Our wonderful nurse, Jen, found us a great movie to watch The Wizard of Oz. He was content and we were finally getting ready to make the move upstairs to our hospital room for the remainder of the night.

Once Kal could sit up, he was a new man. He met his new nurse and immediately started chatting away. He was really feeling so much better now that he could sit up. The great advantage to having a congenital defect is that hospitals are not something you fear. Kalvin doesn't mind going to the doctor's - ever. He never complains about it. He only fears shots. Once he knows shots are not involved he is very comfortable...as you can see from the photos below.

Our nurse informed us that we would need to head down to X-ray at 10 pm. The doctors wanted to get a look at the stent and make sure it was still in place. This is when Kal decided he was going to stay up all night! He was very excited to take his first wheel chair ride!

He did a great job with the X-ray. Everything was right where it was suppose to be!! And, best of all, our little boy was in a great mood!

He finally passed out again around midnight. I slept in his room on the cot and Lars slept down the hall in the playroom. We were all settled in.

The next morning Kal could not wait to order his breakfast all by himself on the phone. He was so excited. He felt so grown up - it was adorable.

His first meal was toast and juice. Daddy ate the chocolate chip pancakes!

﻿﻿

Notice the mound of butter on his toast.
Kal loves butter.

﻿We waited patiently for the doctors to do their rounds. Kal loved being the center of attention and was flirting away with the doctors...

while taking in every word they said. I knew we were going to have a lot of explaining to do because they talked alot about his leg.

You can see Kal here staring as they examine the wound.

We met with Dr. Brown, Kal's cardiologist and Dr. Kasser, Kal's orthopedic, about a surgical procedure being pioneered at Boston Children's Hospital in which a child's blood vessels are stretched, providing new material to make repairs elsewhere in the body. The newly grown arteries can replace sections that are damaged or missing, resulting in fixes that may grow with the child and last a lifetime. We are very excited to learn more about the procedure this Wednesday when we meet with Dr. Heung Bae Kim at Children's. We are over joyed that there may be a solution to repair his leg that will last a lifetime, yet very scared about how Kal will handle all of this. The details of the procedure described in this Boston Globe article dated January 2, 2013. Very new stuff, very new.

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BROTHERS

OUR MIRACLES

Kalvin was born with d-transposition of the great arteries (TGA), VSD, Coarctation of the Aorta (COA), pulmonary stenosis. Kalvin underwent 8 hours of by-pass surgery to correct his defects when he was 5 days old at Children's Hospital Boston. Kalvin has had two catheterizations to correcton his COA; one at 3 months old and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass. Kalvin has received PT since he was 4 years old to help his coordination and OT to help his delayed fine motor skills. Kalvin also suffers from anxiety and has from a very young age. Kalvin is a well adjusted happy boy who doesn't slow down. He loves boating, beaches, baseball (Red Sox & Indians), football (OSU & Patriots), hockey (Rangers & Bruins), soccer and dancing to music. Kalvin is extremely active participating in baseball, soccer, karate, swimming, skiing, skating and piano lessons. The role Kalvin takes most seriously is that of a big brother. When Kalvin was five years old we were finally blessed with another baby boy, Finn (heart healthy). Finn is a miracle all his own. Finn is full of spunk and makes us all laugh on a daily basis. Kalvin is always looking out for Finn and trying to engage him in play. They are truly the best "medicine" for each other.

Thanks for Stopping by

Most that know me, know I love to talk about my children and most know that Kalvin, my 7 year old, had heart surgery when he was a baby, but that is probably all they know about Kalvin's heart. Once Kalvin entered school, I found myself explaining to the teachers and administrators that Kalvin's struggles were most likely a result of 8 hours of bypass surgery at 5 days old. Recently, I was introduced to some other "heart moms" and we began sharing stories and I found myself reliving Kalvin's surgery and all the experiences that came with it. It was amazing to me how far back in my mind I had actually tucked away many of the experiences, but how easily someone else's words could transport me instantly back to a certain place and time. I found it somewhat comforting to share the stories and relive the experiences and it seemed to help the other "heart moms" as well. I was sharing information, links, and pictures I had gathered and thought, "Why not put this all in one location and maybe help some families that I dont know or haven't met yet." And thus began One in 1 Hundred.